Paula: We recently celebrated Adam’s 6 month LUNG-iversary. He has an update for you but first the family wants to thank you all for your words of encouragement, prayers, and your donations to COTA for Team Adam. 100% of each contribution made to COTA in HONOR of patients helps with transplant-related expenses. As a new year begins Adam has more deductible and out of pocket expenses. The insurance has changed so that some of his doctors are now ‘out of network’, so your generosity is appreciated.
Meanwhile, here is ADAM’S UPDATE:
Adam: It has been six months since I got my new lungs. It has been an eventful six months. It has been full of ups and downs. I do not feel that I have completely accepted that fact that I have someone else’s lungs in my body. It feels surreal because the surgery went so well and has healed up nicely that sometime I don’t think about the new lungs. It has been a long time since I haven’t had to think about my lungs. It is an amazing feeling to walk around and not think about my breathing.
That being said, it has not all been a walk in the park (although those are much more enjoyable now). I still spend quite a bit of time dealing with doctors and medicines and setbacks.
The most noticeable thing that has happened these last several months is that I no longer struggle to walk up the stairs. That activity became extremely difficult before the transplant. So difficult, in fact, that I was often stuck downstairs for most, if not all, of the day, eating and such in bed and having my parents take care of me. It is a joy to realize now that I can bound up the stairs and not even think twice about it.
A few weeks back I went with a friend to play wallyball. I wasn’t sure what to expect because I have never played wallyball. Apparently, it is like playing volleyball in a racquet ball court and you can play off the walls. I played for 2 hours and was never once out of breath. I didn’t even realize it at the time.
I went to the Zoo the other day with Atticus. This is something that he and I like to do. We have been to the zoo several times before and after the transplant. Before the transplant, going was quite the task. I had to drag an oxygen tank around with me. And going up the hills was terribly difficult. We went again right after the transplant while I was still recovering. My mom ended up having to rent a wheel chair and push me around. This last time however I was able to walk around the entire zoo without getting winded at all. I didn’t even realize at the time, but upon reflection I was amazed at how easy it was.
You may want to stop here if you just want to hear the good stuff. It seems like there has been something annoying, painful or weird going on continually since the transplant. Here are some of the things I’m going through. This may not be for the faint of heart, so proceed with caution.
For example, I have a hole in my stomach where I have had a feeding tube for the last 20 years. It is slowly healing but it was taken out on October 1 and it still leaks and soaks through several pads every day. Every time I take a drink I can feel a little bit seep out of my stomach. If I take a big drink on an empty stomach some times it will soak through the pad and my shirt. I can usually tell what I just ate because I see mushed up blobs of in on the pad. It is one of the more annoying things that has come from all of this.
I have also been dealing with blood clots in my arms. Almost every time I get an IV put in, a blood clot forms after it is removed. So, I have been taking blood thinner shots in my stomach day and night. The doctors have said blood clots can be a side effect of the transplant so I have to be on the lookout for them all the time.
I am also getting my blood checked practically weekly. They check my anti-rejection medication levels, and other blood chemistry. They have been watching my white blood cell count lately because it is lower than they want it to be. One of the medications I am on lowers it on purpose so that I don’t reject the lungs. A few of the other drugs lower it as a side effect. So, they have taken me off of those for a while to try and boost the white count.
They also check my lungs every couple of weeks with a breathing test. This show how much air I move in and out of my lungs. I am at about 78 percent of a normal person my age and height. That may not sound great but it is up from 14 percent before my transplant. In this test they look at a number that could indicate rejection in the small airways. This number has been going down since the transplant so they are a little worried about that. There is a possibility that this number can go down if I am having reflux from my stomach that is going into my lungs. I have been treated for that for many years now but these doctors are considering surgery to stop the reflux and help protect my lungs. Before they could recommend surgery, they had to do two tests. The first one I stood in front of an X-ray type machine and drank some barium. They could watch the barium go down my esophagus and come back up, interestingly they could also see the barium shoot out the hole in my stomach. The second test required them to put a big tube through my nose and down to my stomach and leave it there for 20 minutes while I tried not to swallow. After they took that tube out they put a smaller tube down my nose and esophagus that they hooked up to monitor I had to carry around for 24 hours. It was awful and we haven’t got the results back but, hopefully soon they will find out and then we can schedule the surgery. During that surgery they may be able to close off the hole in my stomach as well. All that being said, they can’t do the surgery or pretty much anything else until I get my white blood cell count up.
Oh yeah, and every couple months or so they do a bronchoscopy to look for rejection. This is done by relaxing me with some IV drugs and sticking a tube down my throat and into my lungs to look around and take biopsies of the lung to look at under a microscope. It is as awful as it sounds but what can you do.
Even with all of the setbacks and challenges, I am so grateful to be alive. I am so grateful to my donor and his family. I am grateful for the kind words of encouragement and thoughts and prayers of my family and friends. I have been blessed beyond my wildest dream to have this new life to live.